JOAN’S BLOG – MONDAY, NOVEMBER 3, 2008 – GUILT AND MORE GUILT

I am so conflicted. I am so guilt ridden. When my husband was still driving, he did not LIKE it if I went somewhere overnight, but he is capable of staying by himself, and he had friends he could drive to visit.

Now, however, if I need to spend a night or two away from home, since he no longer has a license, he will be completely housebound. I cannot leave him like that. Not only do I feel guilty about it, I think it is cruel to leave him a basic prisoner in his own home.

This problem is cropping up because of a conference I am attending in two weeks, and the trip to Washington in March. The conference is too far for me to drive back and forth in one day. I have been invited to spend the night at the home of one of the conference speakers, with whom I have become friendly. Sid is invited to come along and spend the day with her husband while she and I attend the conference.  Sid does not know either of them, and says he will feel uncomfortable with a stranger. He wants to come to the conference. I feel guilty both ways - trying to force him into a situation that he perceives as stressful or leaving him home.

Then there is the Alzheimer’s Public Policy Forum in Washington DC in March. Last year, Sid complained that I was leaving him home, but he was still driving, and did fine for the 3 nights I was gone, because he was able to get out and about. He was not isolated in the house. This time, I not only would feel guilty leaving him home, I just could not bring myself to do it. He refuses to stay at our cousin’s house. The only option is to bring him with me. That trip was a KILLER. We went non-stop from 6 AM until 10 PM every day. We walked MILES in the House and Senate buildings. It took me 3 days to recuperate when I got home. If he comes with me, he will spend most of his time in the hotel room – he is not able to walk any distances, and would never be able to handle the frenetic schedule.

On the positive side, there will be an event for those with Alzheimer’s Disease to discuss their issues. One of our members is going with her AD husband.

I have a feeling that these two events are the tip of the iceberg. There will be many more where I have to go out of town. I have to make a living for us, and some out-of-town excursions will be necessary. I can’t bring him with me every time, and although he is capable of staying by himself, I feel guilty leaving him home with no means of transportation. And I feel guilty making him stay with someone else. And I feel guilty about having to work so much that I cannot spend more time with him. I guess I’m just on one big guilt trip. It’s not one of my most enjoyable trips.

As you can imagine, he is upset about me going anywhere without him, but he is more bothered about his lack of independence ( i.e. driving). To express his frustration, he wanted me to design a T-shirt for him that says “Alzheimer’s Disease Stinks”. To be honest, “stinks” is not the word he used, but I am trying to adhere to certain standards for this website, so that is the word I am using.

©Copyright 2008 Joan Gershman        

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